Need help safely developing/maintaining spinal strength while body diseased Need help safely developing/maintaining spinal strength while body diseased

starting strength gym
Results 1 to 10 of 10

Thread: Need help safely developing/maintaining spinal strength while body diseased

  1. #1
    Join Date
    Mar 2014
    Posts
    6

    Default Need help safely developing/maintaining spinal strength while body diseased

    • phoenix arizona seminar date
    • texas seminar date
    This is a long-winded post. I am concerned about my safety since I am suffering from a neurological disease and cannot maintain the best of form when using my body but I still want to maintain strength to prevent atrophy and permanent neurological damage. I am thinking the safety squat bar might be helpful since I have extreme difficulty racking a standard barbell unloaded, but I want some advice. I can squat with my bw, it's just painful and hard after several repetitions. I have substantially low bone density on my spine and I am trying to rebuild it and prevent further loss.

    So it's been years since I've been on here. 5 years to be exact. During that time, I peaked in my physical fitness after dropping cardio completely at the advice of forum members here (thank you if you're still here). This was around 3 years ago in 2016, with my bw floating around 165 lbs, even my job had a decent amount of cardio. I went to a routine of 405 lbs. on the barbell for deadlifts for triples for 8 sets. My numbers got lost on an old phone, I've stopped lifting and have been unable to lift anymore so I forgot my last exact weight. My squats were above 320 lbs. for 5x5 and they were ATG, low bar, with no belt. My bench finally got to 225 lbs. for my 5x5 routine but this was very inconsistent compared to the other lifts as was my press (I could not maintain SS weight add-ons and some workouts had to descend and climb back up again). The general public thought I was a "bodybuilder" or on steroids, as they do with most people who do the right lifts with a loaded barbell. I attempted the SS method around 2013 at the advice of a friend after developing stress fractures doing running for a US Naval Special Warfare enlistment program. I planned on USAPL competitions by the advice of multiple competing friends once I got to five plates working sets on DL and four plates on squats and also oncce I started maxing out on a regular basis (I was using the gym as more of injury-prevention program than as a sport, doing PL competitions would require a lot more maxing sessions and max focus). I was working on applying to several police departments to live a more active lifestyle to prepare for a possible military career in 2016 when I started coming down with basically whole-body neuropathy.

    It started with stinging forearm pain after workouts and calf cramps that were waking me up on a routine basis, extreme charlie horses that would bring me into 10/10 pain out of my sleep. My upper body strength was generally lagging behind, my press was a hard battle to get to 135 lbs. 5x5. Then it turned into vague numbness in my hands in fingers, then burning in my feet, then weakness in my upper body on my presses, then horrible back pains, then horrible non-stop 24/7 burning and numbness all over my body, horrible choking and swallowing problems, visual changes, waking up choking in my sleep every couple of hours. Of course my primary care doctor was clueless and sent me to a neurology specialist who couldn't come up with anything more than my psychology was responsible for my symptoms, yes they dismissed me for psychiatric evaluation. Further investigation found average entrapments in the thoracic outlet, which after several physicians and tests, I had surgery on both sides which did not relieve my bilateral brachial plexus neuropathy. During this time I saw several neurologists, most disregarded my symptoms since I looked very healthy and am in my 20s so I did not fit any particular risk category for disease or neuropathy (this is typically an "old person's disease" or gets treated as such). Within four months of having an accident while doing decline barbell accessory work (I dropped it on my head and almost died, lacerated head so bad you could visibly see my skull), I could not physically return to the gym anywhere near normal. I could not physically rack the barbell in a squat position (arms would literally go numb and weak, cramp into 10/10 pain, trapezius and back muscles would spasm). I would drop the barbell as a result despite forcing myself through the worst of pain and cramps. Even when I was able to force myself to squat, my legs would turn into jelly, feet would be on fire, back would feel like I herniated a disc at every level. The press even with a unloaded barbell became near impossible and I developed dysautonomia and nearly passed out with the bar at full extension, similarly this happened after doing deep squats and deadlifts and cause a lot of dizziness and inability to recover properly. It was like reality was turned upside down, like something horrible was brewing in my nervous system.

    While I previously went to several surgeons for my upper-body symptoms, I eventually I saw a prominent spine surgeon who guilt-tripped me once he learned about my workout history and was convinced I had wrecked my back from my five years in the gym with squatting and deadlifting while complaining of sciatica, this was before any MRIs were done and he was nearly determined what the problem was and prepped me for the strong possibility of invasive spine surgery to fix this. When the regular lumbar MRI came back clean, even going as far as to say my spine looked very healthy by the reading radiologist, he was even more interested, as he could physically replicate the severe pain I was having in my back by a single finger, almost exactly like the symptoms his patients with MRI/surgically-proven herniated discs have. I toiled around with him and other specialists and they proposed more somewhat futile surgeries and invasive procedures. Finally, I found a world-famous radiologist who does primarily MRI and nerve imaging close by my hometown in Texas after I started taking healthcare into my hands and deciding to call the shots of who I would see (self-refer) and what tests I would request, etc. etc. I made the right choice; this doctor immediately discovered with advanced MRI technology that focuses on peripheral nerves that my spinal nerves looked like cancerous tumors, were grossly swollen, and I was in need of an extensive neurological work-up with a wide differential ranging from Charcot-Marie-Tooth disease, perineuriomas, lymphomatosis, CIDP, and vasculitis just to name a few things. Several admissions to the hospital later, new scans, bloodwork, a final diagnosis was not found, but they did know my nerves were swollen (all of them, brachial, lumbar plexus, thoracic, cranial nerves, everything, like basically this was the shit I was looking to find for years) and it was a neurogenic problem a neuropathy basically.

    I made a valiant pursuit. I traveled to three other teaching hospitals including Mayo, in desperate search of what I had. I researched everywhere online, talked to people with similar diseases online. Biopsies were taken of everything but the large fiber nerves (nerve conduction studies were inconsistent, so no one knew what nerve to take and the ones that did find problems didn't have surgeons that did these complicated biopsies close to the spine). I pursued my old GI history, other specialist departments, contacted neurosurgeons, cancer specialists, neurological specialists, ophthalmological specialists, just about everyone for any system that likely had manifestations of this disease.

    I had discovered I had a gluten allergy during a serial investigation of possible celiac disease causing my current disease. I most likely have NCGS and I have apparently the "genes for celiac" but never had any tests show celiac antibodies and had x2 endoscope biopsies come back negative for celiac. This was likely holding me back when I was younger as it was keeping my bodyweight around 165 lbs. during my late adolescence and adulthood and keeping me from growing in the gym. I would have daily diarrhea attacks since I could walk as a child. Further allergy testing yielded a ton of possible food allergens usually with mild-to-moderate skin prick reactions that proved effective in practice with changing my diet, unfortunately cow's milk being on the spectrum. Yet all of this stuff did mild improvements for my body and pretty much turned into jack shit for fixing my status quo problem. I brought this up because maybe some of you out there have mysterious GI issues that have not abated with reasonable dietary changes and this could be holding you back from growing in the gym or potentially leading you to a horrible disease like CD or CD neuropathy.

    It become obvious to my current treating specialists that my nerve abnormalities may be due to an inflammatory-mediated condition, so they started high-dose corticosteroid treatment. I requested a DEXA and they found I have a t-score in lumbar spine at -4.0. Everything else was less than 10%. I am thinking the primary reason I am here is to try to see if there is something I can do as close as I can to SS loads to increase bone density in the spine, no matter how "babied" it is. I lost all of my equipment and barbells, I abandoned my power rack and weights as I physically couldn't keep up with them when I moved. I am considering trying to acquire a safety squat bar or find a gym that to try to do squats, but I still have a lot of pain squatting and I don't think I can't safely maintain thoracic extension and deadlift form with this disease because it has jacked with my nerves so much. Has anyone encountered someone or rehabilitated someone with CIDP or full-body neuropathy and been able to help them maintain bone density and at least some strength to where they could recover substantially if the illness went into remission? Thank you. Doing nothing is just not acceptable, even if I am horrific pain as the muscles are just going to denervate and get weaker and lead to permanent, irreparable damage. The "management" approach as everyone here probably knows is just pain drugs and sitting around 24/7 rotting waiting all day long while the people that make $ decide what they want to do.

  2. #2
    Join Date
    Jul 2007
    Location
    North Texas
    Posts
    39,662

    Default

    What is your diagnosis?

  3. #3
    Join Date
    Mar 2014
    Posts
    6

    Default

    Quote Originally Posted by Mark Rippetoe View Post
    What is your diagnosis?
    Neuropathy. Pretty much down now to CIDP vs rare genetic disease.

    There are a laundry list of other issues but those don't interfere with workouts with the exception of some dysautonomia.

  4. #4
    Join Date
    Feb 2018
    Posts
    201

    Default

    Are you on immunosuppressive therapy other than the steroid?

    I donít think you will find specific training guidelines for CIDP here or anywhere else. I think you are right that training will be important to improve and preserve strength and function. Finding a good Neuro specialist in this area to guide your treatment and then finding a good barbell coach to guide your training will be the best route.

  5. #5
    Join Date
    Jan 2018
    Posts
    29

    Default

    Google joe Rohan and Mel Gibson stem cell therapy and watch it on YouTube

    Thereís a treatment center in Panama run by American doctors doing some amazing things that may help you

  6. #6
    Join Date
    Feb 2018
    Posts
    201

    Default

    Quote Originally Posted by bobman View Post
    Google joe Rohan and Mel Gibson stem cell therapy and watch it on YouTube

    Thereís a treatment center in Panama run by American doctors doing some amazing things that may help you
    And how would stem cells help with a diffuse autoimmune neurological process like CIDP? Would they inject stem cells into every nerve in the body? Sounds intense.

    Expensive placebos do work better than cheap placebos, but I wouldnít recommend an unproven treatment for a potentially serious illness, unless there were some compelling evidence that the treatment was safe and potentially effective for that specific disorder.

    I havenít watched the video, so if they do talk about CIDP I will stand corrected, and be quite surprised too.

  7. #7
    Join Date
    Mar 2014
    Posts
    6

    Default

    Quote Originally Posted by jfsully View Post
    Are you on immunosuppressive therapy other than the steroid?

    I donít think you will find specific training guidelines for CIDP here or anywhere else. I think you are right that training will be important to improve and preserve strength and function. Finding a good Neuro specialist in this area to guide your treatment and then finding a good barbell coach to guide your training will be the best route.
    Nope. I am having difficulty finding doctors willing to put in the time to work with my insurance company to pay for quality immunosuppressive therapy like IVIG or plasma, etc.. Coupled with the fact I have no evidence of an autoimmune process in my blood or CSF, it makes them non-motivated even though my insurance is pretty good and they have recently relaxed their policy quite a bit due to a lot of backlash, lawsuits, etc. My current neurologist is leaning towards a more genetic cause, I get it. But I've had several genetic tests come back negative. I have a family history of autoimmune disorders and possible immune neuropathy on my dad's side. A nerve biopsy is even obsolete in some of these disorders due to new tests and knowledge regarding these conditions. If it comes down to me living with this horrible disease for the rest of my life or losing feeling in a certain area with a good chance of diagnosis than I would certainly take the biopsy over living a prison sentence in this condition. But, the problem as I already mentioned is my nerve studies are inconsistent from each specialist since, as I am finding, neurology is under a lot of development with new technology and techniques, in fact they continue to revise and widen the spectrum of CIDP because they are discovering unfortunately through a lot of biopsies that there are many colors and variants of CIDP beyond the classic version hyped up by Mayo and other big-name places that want to almost trademark what these diseases are and take the fame and credit for it. I unfortunately am a victim of this brutal medical reality that I am faced with. If I could sign a loan for $1,000,000 to pay off the rest of my lie as an indentured servant for the absolute cure I would do it. I would pay anything to return to the gym in my previous condition, even though it wasn't even the most ideal of situations.

    Problem is a "good neuro specialist" wants to prescribe drugs and sit around for years with "watchful waiting" because this is typically a non-lethal condition vs other major conditions that they deal with that the public only knows about like MS or ALS that can rapidly become very hazardous or fatal and get the public's eye, grant funding, sympathy, etc. etc.. Essentially I'm being triaged except on a long-term basis. I've been told that there is a "shortage" of IVIG and patients with diagnosed CIDP or being denied care at certain facilities because they aren't "sick enough." Modern medicine has changed to management as a lot of you guys probably already know. Most of the doctors look like they've never visited a gym in the past 25 years and would damn and liken any weightlifting program as to lane-splitting a streetbike down a major highway in heavy traffic at 150mph. Why would they care if a low BMI person like myself is complaining about neuropathy? I am likely to live for the next 50 years given the substantial amount of tests I have that show I am healthy although I am deteriorating neurologically. I am just trying to convey the struggle that I have been faced with the past several years at the hands of apathetic people.

    In regards to a barbell coach, what options do I have in the dallas county area? I was looking more towards someone with specialty with barbells AND rehabbing these diseases which is probably going to be incredibly hard to find since the medical field already doesn't advocate for barbell training for healthy persons. At least someone with some sort of familiarity to understand what is happening and how to avoid common injuries. I am not going to be able to do much lifts. I was really looking into with this post what the side effects would be of chronically loading a barbell with the safety squat bar vs a traditional barbell and other techniques to try to get the most out of barbell work while suffering from a more-rare type of disease.

    Quote Originally Posted by bobman View Post
    Google joe Rohan and Mel Gibson stem cell therapy and watch it on YouTube

    Thereís a treatment center in Panama run by American doctors doing some amazing things that may help you
    Unfortunately that center is laden with a lot of negative press and the doctors doing it don't have the best reputations. I can't really find anything about CIDP or immune-mediated neuropathy and their particular stem cell treatments. However you may be referring to autologous stem cell transplantation under HSCT which is a valid, well-documented hematological procedure where they basically wreck your immune system and reset it. A lot of people online are claiming they are cured from MS, CIDP, T1D, and other autoimmune diseases after doing it but it is high risk and the place that does it at Northwestern just closed shop. Very few places can do it and the ones that do want you to be very disabled before they try it. I've considered it but I think there is still some diagnostic uncertainty at this point before I fork out $50,000 cash and then risk my life and serious side effects for what could be a placebo to my condition. I've contacted the Russian clinic and found out their SOP uses high-dose fluoroquinolone antibiotics during the prophylactic infusion phase which is just a neurology no-no unless you are critically ill and resistant to other antibiotics (very well known to penetrate CNS and blood brain barrier and even cause neuropathy). So yeah, going to foreign countries where there are not enough regulations or medical knowledge may be disastrous. Some people have gone and gotten worse. Some people have gotten CIDP and other autoimmune diseases and special cancers after HSCT. So being touted as a miracle cure is not the right portrayal. But if I had only the choice to live this out or do it I would fucking do it. I would not continue to suffer this everyday as I have stated before, there are times where I wished I had terminal cancer because this has gotten so bad.

  8. #8
    Join Date
    Mar 2014
    Posts
    6

    Default

    Quote Originally Posted by jfsully View Post
    And how would stem cells help with a diffuse autoimmune neurological process like CIDP? Would they inject stem cells into every nerve in the body? Sounds intense.

    Expensive placebos do work better than cheap placebos, but I wouldnít recommend an unproven treatment for a potentially serious illness, unless there were some compelling evidence that the treatment was safe and potentially effective for that specific disorder.

    I havenít watched the video, so if they do talk about CIDP I will stand corrected, and be quite surprised too.
    I think you are probably right. It sounds pretty foolish. He may have heard of HSCT which I also replied about, it's certainly not the same thing as these stem cell shops and is done at an actual hospital and has extensive white papers documenting that it's a legitimate and effective process.

    I didn't find anything about CIDP with this. I wouldn't trust any of those treatments without scientific or medical evidence to back it up for this particular scenario.

    I am currently waiting on some higher-end genetic tests to come back and then I'm going to have to do something different to try to get this fixed.

  9. #9
    Join Date
    Feb 2018
    Posts
    201

    Default

    Yorkman, Iím sorry for your ordeal. It does sound like you are appropriately educating yourself about the limits of medical knowledge in this area. I donít have specific medical advice for you, as you probably know more about state of the art CIDP diagnosis and treatment than I do.

    If you can find a neurologist who will hang in there with you, and will be open to further testing and appropriate referrals and treatments (even if somewhat experimental), that will help. A specialist in neuromuscular disorders or a neuroimmunologist at an academic medical center would be good, as it sounds like you already know, even if you havenít found the best fit yet.

    In terms of a coach, I believe that there are multiple options for SSCs in Dallas. I donít think you should be worried about worsening the CIDP by training, so the coach need not be a neuro expert, but you want someone who can creatively manage your fatigue with flexible programming. Getting stronger is possible for you, and will of course only help, so itís important you find a way to train.

  10. #10
    Join Date
    Mar 2014
    Posts
    6

    Default

    starting strength nutrition camp
    Quote Originally Posted by jfsully View Post
    Yorkman, Iím sorry for your ordeal. It does sound like you are appropriately educating yourself about the limits of medical knowledge in this area. I donít have specific medical advice for you, as you probably know more about state of the art CIDP diagnosis and treatment than I do.

    If you can find a neurologist who will hang in there with you, and will be open to further testing and appropriate referrals and treatments (even if somewhat experimental), that will help. A specialist in neuromuscular disorders or a neuroimmunologist at an academic medical center would be good, as it sounds like you already know, even if you havenít found the best fit yet.

    In terms of a coach, I believe that there are multiple options for SSCs in Dallas. I donít think you should be worried about worsening the CIDP by training, so the coach need not be a neuro expert, but you want someone who can creatively manage your fatigue with flexible programming. Getting stronger is possible for you, and will of course only help, so itís important you find a way to train.
    Yeah, kind of looking for I guess something I haven't seen or heard of from the strength community regarding this since I still remember reading about EMG studies and barbell work in SS, (so it seems like this community has some understanding of neuromuscular order/disorder I guess along with some basic orthopedic stuff like bone density increase from barbell work).

    Yeah I know but like I said the problem is there is such a strong "management" type of approach/medical decision-making that it has severely interfered with my ability to get help. I keep hearing that "this wouldn't change the outcome" to seek a diagnosis through extensive testing, biopsies, etc. from a lot of people. Oh hell yes it would. There are many mainline effective treatments for an established diagnosis of CIDP. There are even cures reported for CIDP and successful remissions. There are possible cures in the works for a lot of these diseases and without the diagnosis you will not be given the time of day for a clinical trial to get it. I'm pretty sure if a good majority of the people here were medical professionals they wouldn't be selling lyrica and spinal cord stimulators as the solution to these diseases, they would be trying to dig down deep and ID the underlying problem and fix it at the microscopic level so one can be as back to normal as possible and be able to take advantage of barbell work and live a long, healthy life.

    I think I might be able to achieve some strength, but linear progress will be impossible until this disease is fixed. I noticed before the severe onset of symptoms my workouts plateaued for 6-12 months prior. In fact it was a struggle to get there even microloading with subweights. I tried resting more, spacing out workouts, cutting back some volume, didn't work and then it massively decelerated and it was truly horrifying getting to the point where racking an unloaded barbell on your spine caused 10/10 pain and was physically impossible. If anyone is seeing these kind of patterns in your programming and you are getting 10-12 hours of sleep a day, eating relatively well, and not working as a stonemason or strongman full-time than you should seek prompt medical attention as it is highly likely you have something serious in the works.

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •